Advocating for one's self with medical professionals - letter to doctor

[papillon]

Experiences as a child taught me not to advocate for myself, and taught me to doubt my experience of reality.

I'm conditioned to be "ok" no matter what and to make sure that no one is upset by me under any circumstances, even if that means keeping them from extending genuine care and support.

So... going to the doctor is really hard for me.

My therapist is encouraging me to see a GP for the first time in years and really discuss everything that I've kept bottled up to the detriment of my health.

I compiled the following letter from others found online, I thought it would be helpful to share with this community.

My therapist said these are reasonable accommodations... but I know I'll feel terrified asking for them! Without her help I never would have known that I could even hope to advocate for myself.

Does anyone else have suggestions for communicating with doctors/ navigating the stressful world of healthcare?






Dr. _____,

I'm writing because I am a soon-to-be patient of yours, and there are a few things that I think it would be beneficial for you to know prior to our first appointment on (date).

I am a survivor of childhood physical and emotional abuse, physical and emotional neglect, and sexual abuse. My medical records will not reflect these things specifically as this is the first time I have communicated them to a medical professional. I've recently entered a new season of safety in my life, with limited or eliminated contact with my abusers, and I am seeking to find a physician who will partner with me in my future health care and help me to address the lingering effects of abuse on my health which have been partially or fully unaddressed.

Because of my history, meeting new doctors and undergoing physical exams can be extremely anxiety provoking for me. My counselor has helped me to assess what I may need in order to feel safe in medical environments and during medical procedures/exams. I thought it would be best to share some of that prior to seeing you.

One thing that is extremely helpful to me is if the first appointment with a new provider can be a consult in which there will be only discussion and no exam. I believe that this is what we have scheduled on (date), and I just wanted to confirm that need.

During the appointment, I will likely be anxious, and will have trouble processing the information we discuss. It is a struggle for me to express what I am thinking and feeling, and whether or not I am feeling safe. It's likely that I will become dissociative during/following a physical exam or during/following discussion of health topics related to the abuse. This dissociative state may or may not be apparent to an observer. For these reasons, if possible, I would like to request to be scheduled for slightly longer appointments than usual, so that I can have time to get grounded, process information, and ask questions.

For a variety of reasons (including history of head trauma, neglect, iron-deficiency, and Complex-PTSD) I will be unable to remember in detail what we've discussed following our appointment. I will take notes during the appointment and may record our conversations; but, if possible, I would like to request to be supplied with a copy of your records from each appointment.

I have trouble initiating dialogue, which is why I thought it was important to send this letter prior to our first appointment. I am very willing to talk about the content of this letter, but I will do much better if I am asked questions, rather than having to start the conversation. Especially in our first appointment, it will be helpful if you will initiate conversation.

Additional accommodations I would like to request include:

• Being in a position during exams where I can have eye contact with someone at all times.

• Being reassured that I can ask questions about any part of my care.

• Having an explanation of procedures. Including knowing that I will be touched, how and where I will be touched, and if I should expect discomfort.

• Assurance that staff want to know what they can do to make me more comfortable, and that they will not be angry or upset if I request something to be done differently.

• Patient reassurance of safety should I exhibit signs of a panic attack, startle when touched, or experience pain during an exam.

• If it is necessary for a male medical professional to be involved in my care, I request that a female medical professional also be present.

I am hopeful about working with you for my ongoing care, and I truly appreciate the time you are taking to read this letter. Please include this letter in my medical records for future reference.

If you have any concerns or would like to touch base about anything prior to our first appointment, please leave a message on my cell and I will return your call promptly: _________.

Sincere thanks,

[radical]

That reads so well.
Good for you in being proactive in getting your needs met.  The great thing is that any doctor who would find anything problematic in this letter wouldn't be a good doctor anyway.  Many doctors would be grateful for this information.
All the best!

[Dee]

That is excellent!  I was reading it and I thought, yet, that is me.  I especially thought that the part about not remembering discussions and how to solve that was helpful.  I wish I had done that. 

My provider is in a network system with my psychiatrist and psychologist.  On my problem list it shows PTSD-complex.  She tries to be caring, but it comes off as nervous to me.  I think she is concerned, but to the point she is almost afraid.  I've decided that is okay, at least she has compassion, I just need to let her get comfortable.  Perhaps I can borrow parts of the letter so she knows what I need, instead of her guessing.  I think that this is good not only for you, but the provider too.

[Kizzie]

Excellent Papillon     We definitely need to advocate for ourselves so "Yay you!"    Would it be possible to use this as an example in the web pages under resources?  (You can just PM me if you'd rather not talk about this here.) 

There are also some information sheets about Complex PTSD in the Resources section here under "Downloads" that people can take to their GPs , T's, service providers. 

[papillon]

Hey Kizzie, yes, please do! Don't give me credit or anything since it's a compilation of other letters plus some of my own wording.

I think I'll reformat it a bit before sending it. More bullet points, fewer paragraphs to make it more digestible. I sort of doubt that someone's going to read it carefully, we're a society of skimmers!

I know I'm not alone in having trouble advocating for myself! I do think it would be a helpful resource for our community to have on hand at least as an idea to start your own letter from.

[Kizzie]

That's great Papillon, thanks so much     If you're going to edit it a bit I'll wait until you have the final version if that's OK. 

Working together to educate ourselves, the public and professionals about Complex PTSD, I like it!!! 

  and  (go team OOTS  )

[sanmagic7]

i think it's a wonderful letter, and totally agree that if a doc has a problem with it, it's not a doc worth doing business with.  congrats to your therapist for helping you with this, and congrats to you for going thru with it. 

advocating for ourselves w/ any medical professional is an absolute must nowadays.  it was only because i spoke up to a doc about my belief that i had adrenal fatigue (at which point he immediately said, 'i don't think so'), and i then brought in a list of my symptoms for him to read ('well, these are all symptoms for thyroid problems as well') that he eventually tested my thyroid and adrenal output in two areas.  my thyroid was fine, but one of the hormones he tested for showed that it was being under-produced.  people have often said i have a big mouth, but, doggone it, sometimes that's exactly what's needed in order to be heard!

so, good for you.  and your idea of taping the visits is great, as well as being so forthright and open about dissociation - the whole thing is wonderful, in my mind.  best to you with this, and i sincerely hope you get the results and care you are advocating for.

[Kizzie]

Hi Papillon - Just wanted to let you know I posted the sample letter here - http://www.outofthestorm.website/downloads/.

Tks again 

[Wife#2]

Papillion, that is wonderful!

May I suggest keeping a copy for yourself which you bring to the appointment? Also, take a notepad with you, with any questions YOU have for the doctor already written down. With space between the questions for you to write the answers. And enough blank paper to add questions as they come up. Bring TWO pens, to help you stay calm about being able to write stuff down.

This is a big step and you deserve to feel very proud of yourself for getting ahead of your fears like this! Wow. You did a great job with that compilation.

Do you have anyone who you'd feel safe bringing with you? My brother did that a few times (he had a friend who was a nurse) and it helped, especially regarding the short-term-memory and not remembering what EXACTLY was said. Also, between my husband and me (both ucPTSD), we both could remember enough to make sense of the whole appointment when I was pregnant.

The hardest thing is to ask ALL the questions YOU have there at the end. They act impatient often, ready to move on to the next patient. Still, that is YOUR appointment time and you have a RIGHT to ask any and all questions, even repeating if you have to, until you understand everything. At least that's been my experience with my OBGYN and my son's pediatrician. I'm teaching my son to ask his own questions and not stop until he understands the answers. He felt VERY empowered after his last appointment.

I can't tell you how proud of you I am! That is so terrific that you realize you do deserve to be understood and treated with respect how YOU need that to look.

[Sienna]

Oh my gosh, what a great idea Papilion! I never thought of this.
It takes courage to go to the doctor i know as i also struggle and don't go to them,
i think its so great that you are doing this.
Good luck to you.